Factors influencing preference and decisions for taking topical or oral medication
| Findings | Illustrative quotes | |
|---|---|---|
| Nature of pain | ||
| Perception of effectiveness of medication | Makes it worse, no difference, limited help, major help, cure | “It just seems like I’m throwing stuff at it and nothing is happening” (patient 11) |
| “Well, they seem to work” (patient 15) | ||
| Perceptions about causes of pain | Concepts: swelling associated with pain but not cause, inflammation is poorly understood term and rarely used in lay circles, arthritis is seen as diagnosis, cause and explanation, degeneration and weakness different, genetic inevitability. Causes: loss of cartilage, bits missing, loss of cushioning, bones rubbing together, muscle deterioration weakness, previous injury, overuse, surgery, age, rotting, weight and pressure, cold, heat, gout, pain in other areas | “Pain is caused by the cartilage disappearing (so the natural padding goes, causing the pain). I assume it’s the end of the bones rubbing together” (patient 9) |
| “The bones wear and crunch against one another” (patient 2) | ||
| “. . . get a walnut . . . there’s a nut inside, rotten . . . on the outside perfect” (patient 11) | ||
| Mechanism of action and resulting perceived effectiveness of topical and oral ibuprofen | ||
| Action of medication | Little understanding present. Gel is absorbed through skin into knee to deaden pain. Effect local only. Gel is absorbed and lubricates knee. Tablets go into blood via stomach, drug travels around body to knee to deaden pain via nerves. Tablets go into the blood and to brain telling brain to stop recognising pain. No concept of anti-inflammatory action. Refer to drug as Ibuleve or ibuprofen, pain killers, or knee tablets | “How does it know to go to your knee?” (patient 4) |
| “I have no idea how they work” (patients 8, 12, 14) | ||
| “It kills pain; it’s not a cure” (patient 2) | ||
| “It does something to the brain that makes you think you’re not having pain” (patient 13) | ||
| “The gel lubricates the joint” (patient 3) | ||
| “It’s absorbed . . . it’s some sort of painkiller isn’t it?” (patient 1) | ||
| “I feel as though something’s been put back . . . like when you take fluid from something and you put fluid back” (patient 13) | ||
| “. . . makes the muscles swell and stops the joints rubbing together” (patient 11) | ||
| Beliefs about medication | Gel: local application makes it faster acting, more specific/effective, less toxic to rest of body; quicker gel is absorbed faster acting it is; gel not as strong as tablets because it doesn’t have to go everywhere and be diluted. Tablets: are more toxic than gel, tablets go everywhere regardless, brain directs tablets to knee; all over effect is positive for those with multisite pain, different medication for different pain sites | “It’s absorbed more easily so it had a faster effect” (patient 4) |
| “I think the cream just does your knee and the tablets go right through you” [better effect] (patient 14) | ||
| “You build up a tolerance to the tablets and then you have to go to something stronger” (patient 2) | ||
| “It’s in the mind, too; the brain takes it to the parts that hurt” (patient 5) | ||
| Medication use | Transient mild, moderate, and severe pain; constant mild, moderate, and severe pain | “. . . I do it every day twice a day . . . because I can feel it wearing off” (patient 3) |
| “I mean I use them when I get a problem particularly when I’m out walking, and before I go walking” (patient 15) | ||
| “If I get really really bad pain I take an ibuprofen tablet like, but I don’t take them very often” (patient 8) | ||
| “I sort of erm do it really as soon as it starts up” (patient 7) | ||
| “I was just sort of a bit desperate at the time” (patient 7) | ||
| “You have it for a long time, it starts to become part of your daily routine” (patient 12) | ||
| Knee pain and pain elsewhere | Isolated knee pain; knee pain plus other musculoskeletal pain; knee pain plus other systemic problems | “Well, it’s (tablets) got to help the other bits of me (with pain)” (patient 4) |
| “I’d be rubbing the stuff all over me if I had gel” (patient 9) | ||
| “I get worries about all the tablets I take” (patient 1) | ||
| Risk assessment of adverse effects | ||
| Perception of risk/adverse effects | Acceptable: none, heartburn, constipation, nausea; unacceptable: oesophagitis, more pain, other more serious illness | “If I took ibuprofen every day, I’d have heartburn every day” (patient 8) |
| “I’m not normally a sicky person . . . so I thought I would give things a rest just for a few days” (patient 13) | ||
| “Knee pain is nothing compared to my heart problems” (patient 1) | ||
| “I think long term in larger doses I think there would be risks” (patient 16) | ||
| “You can get addicted to things I think” (patient 6) | ||
| Practicality of use | ||
| Practicality | Ease and convenience; inconvenience (gel messy, takes time) | “Sometimes it’s just not convenient, or you’re handling food” (patient 4) |
| “I’d have to pull my trousers down to put it on, it’s not convenient at work” (patient 16) | ||
| Advice and information that affected subsequent choice of medication (and consequent trial and trial arm choice) | ||
| By default/lack of knowledge | Concept of preference by default (necessary medically); medical staff superior knowledge; little trust in own knowledge; accept narratives at face value, no matter from whom, no evaluation of knowledge and “blind faith” | “If it was a doctor who said, ‘We’ll try you on so and so’, I would try it” (patient 7) |
| “No, just an ordinary layman off the street, you know like you do when you’re talking on the bus” (patient 13) | ||
| I’m squeamish about reading about side-effects because I imagine you have them later” (patient 4) | ||
| Effect of previous experience | Personal: most powerful influence; family and friends: powerful influence; narratives: used to support opinion; previous illness: all relative to severity—for example, knee pain to diabetes and heart failure; previous similar medication experience | “I’ve had stomach problems and I couldn’t take the ibuprofen” (patient 2) |
| “I’ve never had any trouble taking tablets [heart, blood pressure]; tablets have never been a problem to me” (patient 7) | ||
| “My friend’s husband was so poorly with them” (patient 1) | ||
| Curiosity | “I hadn’t tried the cream so I thought it would be interesting” (patient 9) | |
| Attitude to trial and allocation | Personal request to participate, feeling special; participation conditional on medication; extra attention and care for their pain | “I was just asked by (practice nurse) if I would just like to, you know, take it” (patient 12) |
| Reasons for participating in trial | Personal request, curiosity, attention, help self, help others, speed up healing process | “I think they knew of me . . . I’m a good guinea pig perhaps” (patient 8) |
| “It was a worthwhile project . . . if I could contribute then I ought to do” (patient 15) | ||
| Future preference | Resignation: nothing of any use—avoidance; acceptable form of control—continue use; need more relief—use both; last resort—surgical intervention; exercise—self help; alternative treatment | “I stand a lot, because I’m frightened I’ll seize up” (patient 13) |
| “Ah well, life goes on” (patient 5) | ||
| “I would try resting, then gel, then ibuprofen, then GP, then knee replacement” (patient 10) | ||
| “New knees are a last resort” (patient 1) | ||